Author: June Kinoshita

Wednesday, February 13, noon to 1:00 pm EST. Register here We are delighted to bring to you this live webinar with Kiera Berggren, a research speech-language pathologist (SLP) in the Department of Neurology at Virginia Commonwealth University. Berggren was previously part of the FSHD Clinical Trial Research Network (CTRN) site at the University of Utah … Read more of “Webinar on swallowing and speech in FSHD” »

We can do more than simply aspire to a treatment in some undefined future. We are confident that, with your continued support, we will have treatments for FSH muscular dystrophy on the market by the year 2025, so that families everywhere can live out their dreams. This is a critical time! The patients and families … Read more of “Cure FSHD? Now is the time!” »

You’ve made a difference and we are grateful As the year draws to a close, all of us at the FSH Society wish you Happy Holidays and thank you for the sacrifices you have made to support our mission. You have had life-changing impacts, not only through the research and patient education your donations have funded, … Read more of “Peace Joy Gratitude” »

This year-end webinar by FSH Society CEO Mark Stone is a must watch. He lays out our detailed strategy that will get treatments for FSHD to our families by the year 2025. We have a moral imperative to do everything in our power to overcome all obstacles to FDA approval of the therapies that are … Read more of “An urgent call to action” »

The University of Massachusetts Medical School’s Wellstone Center for FSHD Research is a leading team of scientists dedicated to understanding FSH muscular dystrophy and developing treatments. The center kindly hosted our New England Chapter’s November 4th meeting, which began with a tasty lunch, followed by a series of talks about some of the cutting-edge research … Read more of “New England chapter meeting talks” »

“Our mom will always be a superhero in our eyes.” Ever since we can remember, our mom has told us that she has “special muscles.” When we were younger, we thought this meant that she was a superhero, and her special muscles were her superpower. As we’ve gotten older, we now know that her special … Read more of “A treatment is out there” »

by AUBRIE LEE I have a disability. It has manifested differently throughout my life, I have felt differently about it in various stages of my life, and people have treated me differently my whole life because of it. I could walk when I was a child, and I transitioned to using a wheelchair over my … Read more of “Finding beauty in disability” »

If you are scrambling for last-minute holiday gifts to delight the FSHers in your life, here are a few suggestions. We’d love to hear about your best holiday gift ideas in the comments section! Reusable drinking straws. While FSHD can make it hard for some to sip through a straw, many others rely on straws … Read more of “Holiday gift ideas” »

MINNEAPOLIS, MN- December 12, 2018 – New research by University of Minnesota scientists has revealed the three-dimensional structure of the DUX4 protein, which is responsible for the disease, facioscapulohumeral muscular dystrophy (FSHD). Unlike the majority of genetic diseases, FSHD is not caused by a protein that is missing or not functioning properly. Rather it is … Read more of “DUX4 structure unveiled” »